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Living at Risk: The Sibling’s Perspective of Early‐Onset Alzheimer’s Disease
dc.contributor.authorWain, Karen E.
dc.contributor.authorUhlmann, Wendy R.
dc.contributor.authorHeidebrink, Judith
dc.contributor.authorRoberts, J. Scott
dc.date.accessioned2019-01-15T20:28:06Z
dc.date.available2019-01-15T20:28:06Z
dc.date.issued2009-06
dc.identifier.citationWain, Karen E.; Uhlmann, Wendy R.; Heidebrink, Judith; Roberts, J. Scott (2009). "Living at Risk: The Sibling’s Perspective of Early‐Onset Alzheimer’s Disease." Journal of Genetic Counseling 18(3): 239-251.
dc.identifier.issn1059-7700
dc.identifier.issn1573-3599
dc.identifier.urihttps://hdl.handle.net/2027.42/147019
dc.description.abstractEarly‐onset Alzheimer’s disease (EOAD) is an increasingly diagnosed condition and is associated with genetic risk factors. This is one of the first studies exploring the lived experience of siblings of individuals with EOAD. We used structured questionnaires and semi‐structured interviews to assess a broad range of siblings’ experiences with and beliefs about EOAD, including knowledge, perceptions of personal risk, level of worry, and effects on life decisions. Participants (n = 24) were predominantly female (62.5%) and middle‐aged (mean = 56.8 years; range 37–83). When asked about risk factors, genetics was cited most frequently (62.5%). Several potential means of reducing AD risk were endorsed, with 54% reporting engagement in behaviors for this purpose (e.g., keeping mentally active). Participants ranged widely in their perceived personal risk of AD (range: 0–100; mean = 35.6%), with higher perceived risk associated with worry about AD (p < 0.01). Understanding siblings’ experiences with EOAD can inform how genetic counselors and healthcare professionals work with this population to facilitate risk communication and decision‐making about testing and healthcare.
dc.publisherSpringer US
dc.publisherWiley Periodicals, Inc.
dc.subject.otherWorry
dc.subject.otherGenetics
dc.subject.otherDecision‐making
dc.subject.otherLived experience
dc.subject.otherRisk
dc.subject.otherSibling
dc.subject.otherEarly‐onset Alzheimer’s disease
dc.titleLiving at Risk: The Sibling’s Perspective of Early‐Onset Alzheimer’s Disease
dc.typeArticleen_US
dc.rights.robotsIndexNoFollow
dc.subject.hlbsecondlevelHuman Genetics
dc.subject.hlbtoplevelHealth Sciences
dc.description.peerreviewedPeer Reviewed
dc.description.bitstreamurlhttps://deepblue.lib.umich.edu/bitstream/2027.42/147019/1/jgc40239.pdf
dc.identifier.doi10.1007/s10897-008-9206-8
dc.identifier.sourceJournal of Genetic Counseling
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dc.owningcollnameInterdisciplinary and Peer-Reviewed


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